georgiagirl...

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ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 2/11/2009 6:28 AM (GMT -6)   
Hi georgiagirl- I see that you are still on Rocephin. Do you feel as though you have plateaued on it? I am on my second round now about 8 weeks in and I don't feel much of a difference. I was wondering if your doctor talked about combining it with another IV abx. I am seeing my doctor in a couple weeks and I am pretty sure he is going to add Zithro IV or take me off Rocephin and do Vancomycin.
 
I had great success with my first round of Rocephin but this time isn't going as well. What else are you taking for orals? Have you ever taken flagyl. I keep reading that you need to have a few months of that in order to get the cystic form. I have never been on flagyl. I am on Zithro/Plaquenil and Cowden herbal Enula. I still think I might be dealing with Bart. What symptoms do you have left? Thanks!
 
Kim

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 2/11/2009 12:33 PM (GMT -6)   

georgiagirl-I am happy to hear you have had some improvement. I am on diflucan and nystatin also. I only take the diflucan twice a week though. I think my doctor has me on plaquenil for the cystic form but I have been on it for a long time. I am thinking maybe trying to pulse the Rocephin with another IV abx. I will know when I see him next month.

My current symptoms are still the major fatigue which usually hits around mid afternoon especially if I am working. And my leg which has pain-twitching and shocking sensations. Maybe I am just stuck with these two I am not sure if anything will help them. I take lunesta to sleep and have been sleeping great for 2 months now. Please let me know if you add another IV med I will be curious to know what else might work. Take care!

Kim


georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 2/11/2009 4:12 PM (GMT -6)   
I will let you know if anything changes. Thanks

Onmyway
Regular Member


Date Joined Jan 2008
Total Posts : 316
   Posted 2/11/2009 6:26 PM (GMT -6)   

Hey Herogiagirl,

Plateaued, just like we talked about today! I was thinking after we hung up and I really think you should tell him that is how you feel, like you are not improving like you were and would like to switch it up and possibly switch to Tygacil! Then we can be Tygacil buddies! tongue   No seriously a change would probably be good for you. Stagnant and on one drug for a long period of time is proving not so beneficial for you!

OK, keep me updated on everything even your arm pain! Speaking of arm pain my right arm is killing me!!!!!!!!!  I also sent you that email so check your email!

Have a great week!

Hugs,

Onmyway

 


Onmyway
 
Diagnosed with Lyme 11/06
Treated until 10/07. Saw another wonderful LLMD in NY and was diagnosed with Bartonella and Babesia as well as Lyme!!!!!!!
Went entire year not knowing I had two coinfections!!!!!! Always test for coninfections!!!!!!!
Onmyway to recovery!!!!! :)
5-29 Blood sugar drop to 33 for 3 days?????? Very Bizarre
Currently waiting for Tonsillectomy! LLMD and ENT believe they are clogged and backed up with Bacteria and fighting against immune system! Oh Boy!
6-25 had Tonsillectomy- Worse pain ever!!!!!


Onmyway
Regular Member


Date Joined Jan 2008
Total Posts : 316
   Posted 2/13/2009 5:18 PM (GMT -6)   

Hey girl,

Yes is was the Tygacil until I got used to it! Now I have a lot of energy and don't sleep at all during the day anymore. Well very rarely!

No problem about yesterday and all is fine they won't say a word I spoke to them in depth about it! Our Dr and the other Dr are going to work together on her case and get her treated covered under insurance! It all worked out! I am so happy b/c she is really sick and needs some help!

Yes Tygacil is used for Lyme as well as Bartonella! That was what I was told. It is working wonders now all I need is for my insurance to cover my Mepron so I can get my Babs under control. The sweating is awful.

I hope you are doing ok! I will catch up with you next week!

The arm is still really sore but it is getting a little better! It will just take some time i guess!

Hugs,

Onmyway

 


Onmyway
 
Diagnosed with Lyme 11/06
Treated until 10/07. Saw another wonderful LLMD in NY and was diagnosed with Bartonella and Babesia as well as Lyme!!!!!!!
Went entire year not knowing I had two coinfections!!!!!! Always test for coninfections!!!!!!!
Onmyway to recovery!!!!! :)
5-29 Blood sugar drop to 33 for 3 days?????? Very Bizarre
Currently waiting for Tonsillectomy! LLMD and ENT believe they are clogged and backed up with Bacteria and fighting against immune system! Oh Boy!
6-25 had Tonsillectomy- Worse pain ever!!!!!


Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 2/13/2009 7:19 PM (GMT -6)   
georgiagirl said...
Hey Kim!
I have been on Flagyl before. But lately my doc. will give me 5 days of it occationally. It made me very sick last time . I guess that ment it was working because when I stopped it I got even better. I have also been on a very strict candida diet and occational diflucan and nystatin. I have much more energy. I will start ambian cr today in hopes to get more sleep. I did 5 mos. of rocephin also. Right now i'm only on the IV rocephin. Just trying to see where i'm at.... I can't take zith.... wish I could.
Not sure what's next, just waiting on the doc. to decide for me.
My current symptoms are neuropothy, weakness and delay in my hands and feet, stiff neck,brain fog fatigue, inner tremmors and twitches, insomnia, hyper reflexes, arthritis and joint pain.Mostl of these have improved with IV though.
 
GG, this may sound like a very odd reccomendation for isomnia treatment, but I had it for the first 1.5 years I was sick and undiagnosed, and the only thing that's ever actually made a real difference was garlic.  I have absolutely no idea why.
 
For quite a while I never even made the connection between how the insomnia would come back within just a few days whenever I stopped the garlic. Freeze-dried or fresh are the only two that have this effect. Fresh is dirt cheap, so I've switched to that. Seems to require a lot to help though, 7-8 grams of freeze-dried or close to a whole bulb of fresh (crush it really good first though).
 
Hey you're in the Atlanta area, right?  I'm in Douglasville (near Six Flags).
 
 
 
 
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